Saturday, 27 June 2009

Perhaps the saddest thing I'll ever read

Ask someone to name a terminal illness, chances are they'll say "Cancer". 13% of us will die either from the disease itself or secondary effects. It usually affects the elderly and the vulnerable for obvious reasons, but its deadliness means that when every now and then we hear of those poor souls who have contracted that illness when they're still just kids pulls at the heartstrings every time. Luckily there are treatments available which can in some cases completely eradicate the disease or manage to prolong life beyond what would otherwise be expected. However, the fact remains that thousands of kids will die due to cancer every month.

In February of this year, 13-year-old Daniel Hauser, of Sleepy Eye, Minnesota, was diagnosed with Hodgkin's lymphoma, a type of cancer which attacks the immune system and white blood cells. Left untreated, the disease would kill him within a year and a half. However, Hodgkin's is one of the most common types of cancer and is widely regarded as one of the easiest ones to treat, with chemotherapy being particularly effective. In normal circumstances, Daniel would receive several high-intensity courses of chemotherapy, consisting of cocktails of drugs designed to destroy all of the cancerous cells. Unfortunately there are usually many unpleasant side effects: vomiting, hair loss, digestive problems, nervous twitches, muscle spasms. But with chemotherapy, the survival rate for Hodgkin's is an impressive 92%.

However, Daniel Hauser has become the centre of a massive debate among the medical, scientific and religious communities. Because, at the age of 13, he has refused chemotherapy saying that it contradicts his religious beliefs. In fact, he has refused all treatments other than so-called 'natural remedies' including ionized water. To be blunt, I'm no oncologist, but for all the good these 'natural remedies' can do for colds, infections, etc., a few cups of herbal tea is not going to cure a malignant form of cancer. Daniel has just chosen to die within eighteen months. In fairness, chemotherapy is a horrible process, as anyone who has ever had it will tell you, and Daniel has told reporters that he felt it was making him sicker than he was getting better. But without it, his chances of survival beyond two years' time are less than 5%.

As he is under 18, American law recognises him as a minor. In most medical debates like this, parents of a child can overrule that child's wishes if doctors and judges agree that it is for the child's own good. There was a recent case of a 16-year-old girl refusing life-saving drugs after a car accident because they had been tested on animals, but her decision was overruled by doctors and her parents. In this case, however, Daniel's parents agree with his choice, as they are all followers of the same religion.

This raises an ugly question. Does a person have the right to refuse treatment and condemn themselves to a painful, drawn-out death on the basis of religious belief? My personal morality would say, hesitantly, yes, they do. I have always believed that people should be able to choose within reason what they do with their own bodies and their own lives. It shouldn't make a difference how old this person is, as long as they are capable of rational and logical thought. I'm technically a minor, and I would want the ability to make choices about my treatment or death - if I was told I had an untreatable form of terminal cancer that would end in a painful death, I would want the right to ask to be filled full of morphine and given to God. But if the disease is perfectly curable, do people still have the right to refuse treatment even if it will result in eighteen months of agony?

So now we have a dilemma. If we accept that everyone capable of rational thought has the right to autonomy over their own body and their own life, then we are faced with the prospect of having a 13-year-old kid die when it could be avoided. Half of me says, "it's his life, his beliefs, he can choose from all the options" - the other half says, "For the love of God, he's just a kid, who cares about his mumbo-jumbo naturalism, pin him down and give him the juice". If his condition worsens and he changes his mind it'll be too late, the cancer will be too developed. Martin Luther King said that the ultimate measure of a man is not where he stands in moments of comfort and convenience, but at times of challenge and controversy. In other words, that one's morals should be maintained despite the circumstances. But if we keep that belief, that every person has a right to decide for themselves what to do with their life, then we condemn a child to death.

What is the solution? There are two real options:1. Rule that Daniel Hauser is not capable of rational enough thought to make a decision about withholding life-saving treatment. We can base this conclusion on the fact that no rational person would refuse something that would save his or her life. As Hauser and his parents would be declared legally unfit to make such a decision, the court would be free to force him to undergo chemotherapy. Hauser's doctors are pressing heavily for this option. Having seen hundreds of kids die from cancer which they couldn't avoid, I can understand why they will fight hard. But can we justify ruling someone insane just because they have religious beliefs?

2. Rule that Daniel Hauser has every right to refuse chemotherapy and that he understands the risk perfectly. This preserves the human right of autonomy, but results in the unnecessary death of a 13-year old kid, and also could end up setting the framework for other cases, such as the animal rights crowd. The question is where to draw the line - do we respect everybody's beliefs, even when it results in their own destruction? Even when it's their own body which they choose to destroy?

The judge has ruled that Daniel Hauser is logically impaired, but based this not upon his religious beliefs but evidence that he suffers from learning difficulties and thus does not understand that he will die if he doesn't have the treatment. Surely this cannot be true for both his parents, as well? What would I have done in his place - I don't know. Usually, these sorts of discussions take place when the religious parents don't want their kid to have a life-saving blood transfusion, and the court says that the kid has every right. That's black and white in my view. But here, respecting human rights and freedom of religion results in the death of a 13-year old.

Let's not forget that Daniel Hauser is the victim here. I hope that he sees sense and agrees to the chemo anyway, although that seems unlikely. Most of all, I hope that he pulls through.

3 comments:

I think that another solution (that became apparent after the second to last paragraph) is to explain to Daniel, until we can be sure he understands that he will be lucky to live beyond 2 years without the treatment.

tell him he's cutting his nose off to spite his face, give him a slap and inject him with the drugs...

oh no wait. don't do that. let him die. millions of people die. this is 1 kid. if he wants to die then thats his choice. To be honest anyone who CHOOSES to die, well. Should they really have life? - cmon people darwins evolution and what not. ever heard of the darwin awards? anyway off topic.